Tag: uk

How did we get to a point we're visiting a hospice? What does that mean? Is Jaxon okay? Jaxons diagnosis has not changed. His prognosis is still unknown. His syndromes affect his quality of life hugely; he is fed with a feeding tube, has multiple medications throughout the day, has numerous appointments a week. His …

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I missed a call from the geneticist. I kicked myself when I listened to the voicemail asking me to call back knowing they'd have left the office by now. Jaxons geneticist had recently sent more bloods to test for Bartters Syndrome. If you don't know the back story to this, he struggles significantly to maintain …

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Sigh with me guys. Another first for Jaxon. Not sitting up, not 'mama', not dipping his toes in the sea. Oh no, Jaxon does not do normal milestones. This milestone was *drumroll please*... the high dependency unit (HDU). The calm before the storm Following his operation that appeared to go so well on Friday 5th …

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First things first, I really wanted to be sharing a positive post. All I ever want is to ooze positive, happy vibes. But even those with millions in the bank and a happy home have bad days. I've had more than my fair share of tough weeks recently and that's down to my sons rare diagnosis …

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Hello, If you're new to my blog, it can look a little overwhelming. If you've been following from the beginning, it can still be a little overwhelming. A lot has happened in the last 8-9 months and I write what we experience, as we experience it. This means each blog has been about something new. …

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Ok, so I'm not actually going to post a pic of his geneticist, or give any names but this blog will give you a little background on Jaxons geneticist, what he does, and our most recent appointment with him which was this morning (Tuesday 1st May 2018). I originally met the genetics doctor in November …

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Donate to Jaxon

We're currently fundraising for a number of causes to improve Jaxons quality of life from private therapies to eating school and everything in between. Many have asked for a link to donate so I've swallowed my pride and taken the plunge because our ego has to take a seat our babies best interests.